A year and a half ago, Renata Sorba published her book
Neither different, nor identical, but free, where she
wanted to tell what she experienced when she became blind. She
gathered anecdotes, meetings, moments of her everyday life
characterized by reflections and testimonies of the difficulties
she had during her disease, Renitis Pigmentosa, which brought her
to change and to undertake personal, working and sport paths, for
instance she began to practice archery, and she became an Italian
champion. In her book Renata also talks about the guide dog, a
fundamental support for her independence.

Renata has decided to bring more visibility to her book by
making it available also in an e-book version both in Italian and
in English. Through the e-book version it is possible to bring all
over the world her story and it is possible to make people aware of
how a person with a sensorial disability lives and how he/she has
to organize his/her life and the life of the people around him/her.
People know very little about Usher’s Syndrome and about the
problems a person has when you can’t count anymore on your eyes and
ears. E-books are today an easy, cheap and useful tool to read,
because reading is facilitated and adaptable to any type of low
vision. This cultural and social heritage is enriched by the
presence of an audio book, that allows blind people to listen to a
story that can help meditate and open the mind for those who don’t
know the diseases and the activities that Renata has told in her
book. Thanks to the digital version, today a true and sincere
testimony can enrich and widen a topic that just a few people have
the possibility to know and examine.

Part of the proceed will be given to voluntary
associations.

The e-book versions are available from June 17th on
the most important digital stores all over the world like Amazon
Kindle, Ceebo, iBookstore, Kobo and a lot more. The audio book
versions are available on every MP3 musical stores and programs
like: Spotify, Youtube, Deezer, Amazon Music, Google Play,
Napster.

You can also buy the book online on the website
www.renatasorba.com

Renata Sorba

MY DISEASE:
USHER SYNDROME

HOW IT DEVELOPS

Usher syndrome, considered a rare genetic disorder, was first
described in 1958 by Von Graefe, but it was named after the
Scottish ophthalmologist Charles Usher.

Usher syndrome is characterized by a congenital hearing loss
associated with retinitis pigmentosa, that is to say a gradual
deterioration of the retina. This syndrome affects 3.5 – 6.2 people
out of 100,000 of the entire European population. About 3-6% of the
people affected by a congenital hearing loss have the syndrome, but
also18% of people with retinitis pigmentosa and 50% of people with
both visual and hearing impairment have it.

There are three different types of Usher syndrome, based on
clinical characteristics, hearing impairment and in some cases also
balance loss.

Type I

People affected by Usher I are usually born deaf.

Sometimes they are not completely deaf, but they can hear just
low frequencies; they also have problems with their balance because
they don’t receive signals from their inner ear. At the age of ten
they show the first symptoms of retinitis pigmentosa, photo
sensibility (Picture 1, sensibility to light with the effects of
dazzling), and difficulties in seeing with little light
(Picture 2, crepuscular blindness).

Type II

People with Usher II are born with a bilateral hearing loss that
can be moderate or serious. Using a hearing aid they are able to
hear and speak. Most of the times the hearing loss is steady;
rarely there are people who completely lose their hearing. The
degeneration of the retina starts during adolescence.

Type III

This is the rarest type, mostly known in Scandinavian countries
and really rare outside of those countries. People affected by it
are born without any hearing loss, but it starts during the first
years of life, it is progressive and around the age of 30-50 it can
be serious. The degeneration of the retina starts during
adolescence (Table 1). Sometimes there are also balance
problems.

ushersyndromeconventionsrecords.pdf

CLICK HERE TO DOWNLOAD

VISION LOSS

The idea of these pamphlets came to the A.P.R.I. association
from the need to make people aware and to explain the reality and
the problems related to this situation to the ones who ignore it.
The visual impaired often finds himself in an intermediate
condition, as for example: it could be possible that he can see a
fly and right after he’s not able to see a wardrobe.

Episodes like these, everyday, make the visual impaired live a
destabilization state and at the same time hinder the people who
participate in his social life.

The main goal of these pamphlets if to teach people this
condition and make them identify and share problems related to
visual loss without falling in frivolities and rhetoric.

Our association is open to anyone who wants to talk and get
closer to this unknown world.

The coordinator

Renata Sorba

NEWS

In a month it will be a year and a half that I live with Renata.
My life with her is pretty intense and demanding, but funny!

She observes me a lot and she often laughs..she says I’m
amazing! She is always comparing me to Rudy, she can’t help it.
Rudy was my predecessor and Renata compares us not to see who is
better or worse, but simply to study two completely different
personalities linked by the same purpose. She says that when I do
something is like I am playing, that I look sly but at the same
time she trusts me. I am a lot different from Rudy: when I drink
there is always water everywhere, when she puts the harness on me I
always “dance” around her, when she calls me I am always sneaky,
but if she has a biscuit or something attracting I run ot her right
away! When it’s really hot I love laying down on the floor in the
entrance, I love welcoming friends when they come visit with a lot
of affection and wagging my tail. I am really sociable, in
particular when I am at the park with other dogs, I am never
aggressive, I am always communicative and if some of them growls at
me I snub them.

My eccentric nature leaves Renata a little bit perplexed, but
she is smart, and she tested me more than once and when I am
guiding her no one can stop me! I am confident, careful and
vigilant. Another thing I do is to lay down, on the bus, between
Renata and the seat, since that time when we got really scared when
a bus driver did a heavy braking, and since that day I’ve been
protecting her and myself in this way. Another particular thing I
do, when it’s really hot, when we are waiting for the bus to arrive
I always put my head under a bench, if there’s one nearby..but when
the bus comes I stand up right away and guide my owner on it. In a
year and a half Renata got to know me really well, but she always
amazes about something I do, I keep her really happy, for sure! She
pets me a lot, she is really careful with my health, I understand
her, after the experience she had with Rudy... but in the end she
found again happiness and the joy of living with me! A lot of
people say that I’ve changed a lot in this year and a half, I’ve
grown up and wiser, but I still do the strange things I did before!
The important thing is that I am always responsible and that I
guide well.

Thanks to Renata and all the people who love me and who welcome
us in their daily lives!